Online Education and E-Consent for GeneScreen, a Preventive Genomic Screening Study

Overview

Journal Public Health Genomics

Specialties Genetics
Public Health

Date 2017 Oct 26

PMID 29069655

Citations 13

Authors

R Jean Cadigan

Rita Butterfield

Christine Rini

Margaret Waltz

Kristine J Kuczynski

Kristin Muessig

Katrina A B Goddard

Gail E Henderson

Affiliations

Soon will be listed here.

Abstract

Background: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features.

Methods: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey.

Results: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions.

Conclusions: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.

Citing Articles

Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studies.

Norton B, Liu J, Lewis S, Magee H, Kruer T, Dinh R medRxiv. 2024; .

PMID: 39040210 PMC: 11261908. DOI: 10.1101/2024.05.01.24306461.

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.

Kassam I, Ilkina D, Kemp J, Roble H, Carter-Langford A, Shen N J Med Internet Res. 2023; 25:e42507.

PMID: 36763409 PMC: 9960046. DOI: 10.2196/42507.

Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.

Peay H, Gwaltney A, Moultrie R, Cope H, Boyea B, Porter K Front Genet. 2022; 13:891592.

PMID: 35646095 PMC: 9133477. DOI: 10.3389/fgene.2022.891592.

GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing.

Rasouly H, Cuneo N, Marasa M, DeMaria N, Chatterjee D, Thompson J J Genet Couns. 2020; 30(3):742-754.

PMID: 33368851 PMC: 8246865. DOI: 10.1002/jgc4.1364.

Demonstrating 'respect for persons' in clinical research: findings from qualitative interviews with diverse genomics research participants.

Kraft S, Rothwell E, Shah S, Duenas D, Lewis H, Muessig K J Med Ethics. 2020; .

PMID: 33023975 PMC: 8021602. DOI: 10.1136/medethics-2020-106440.

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